Category Archives: Autism

How I sick

How I sick

We’re all getting over being sick.  And by “all” I mean Andrew and myself, although both kids have been cranky and coughing for the past few weeks, so maybe them too.

It’s hard to tell with them.  If they don’t have fevers, I watch their behaviors.  Words are no help – Isaac doesn’t have the skills to say how he’s doing, and Kai has so many words but not quite enough experience to pick the right one.  “My throat hurts,” he’ll say which sounds promising, but then he follows with, “which is why I have EXTRA energy today!” and then it’s all meaningless.

A first, with this bout of illness.  I was laying on the couch, eyes closed, trying to cat nap while Sponge Bob blared on the TV, Kai talked loudly to his new imaginary friend, San Fawango, and Isaac stimmed while pacing in an oval in front of the couch.  Isaac bent over my face, and said, “Mommy’s sick.” He was just repeating what I’d been telling him all day, and I expected him to then ask for sausage or Cheerios or anything as long as I got up and started acting like Mommy again…but instead he leaned in close, and kissed my forehead.  Then he went back to his oval.

This means my autistic tween has officially been the nicest to me when I’m sick than anyone in my household.

Okay, this is not entirely fair to Andrew.  The problem is that Andrew and I “sick” differently.  Andrew keeps going until he truly cannot without passing out, and then he holes up in our room, in the dark, and sleeps until he is well enough to keep going again.  He does not want tea, or soup, or sympathy.  He wants to keep going, and then sleep in a dark hole, and then keep going some more.

I want to rest.  I want to put my feet up with tea and a book or TV.  If I have to be sick, I at least want to enjoy “not working”.  I want people when they walk by to say “how are you doing, sweetheart?” and me to say “a little better” or “the same” and then they should offer to bring me tea or soup.  I want to keep my days and my nights separate – awake but resting during the day, sleeping at night for my usual sleeping time.

I’m not saying my way is better.  It’s just what I want to do when I”m sick.

The problem is, Kai certainly and Andrew subconsciously feel that if I am awake during the day, then I am well enough to keep going.  In order to get the rest I need, I feel like I have to hole up in our room, in the dark, alone, and I don’t want to do that…but if I”m on the couch, awake, I’m signaling to half my family that I’m available.  I should be capable of emptying the dishwasher, or making snacks.

But my Isaac.  He gets it.  Mommy’s sick = kiss on forehead, and leave alone.  At least I have one on my side.

Silver Linings. Very thin ones.

Silver Linings. Very thin ones.

August is, as always, August.  Both kids are rough without school structures and therapies, Andrew and my work schedules remain full, childcare is costly and logistically complicated, it’s stupid hot, etc, etc, etc…but there are a few good things.  Kind of good.  You can note their goodness as you sink into the bog of August soul-sucking angst.

  1. Family rallies.  We have a steady stream of family coming in to adjust the adult to child ratio, to watch the kids so we can squeeze work in, to facilitate the Camp Hagan schedule I set up to try to give the kids some sense of order.  Aunt Kyla is here this week, Cousin Lena is coming for a long weekend, then Grandma Kathy comes on her heels…and then it will very nearly be the first day of school.  It is wonderful not only to see family, but to feel their love and support in their sacrifice of time.
  2. Be in the now.  The only way to get through August, I find, is to shut down the long-term thinking.  It’s too much.  It’s impossible.  It’s an unreasonable time frame of hard.  When you look at it, you get completely overwhelmed and kinda bitchy (I mean, I do anyway).  So – you only look at today, and maybe a peek at tomorrow to be sure you have childcare.  And you find that today, this hour, this minute, this breath, you are, in fact, doing it.  You are okay.  And the next breath.  And the next.  It’s – good? – to be reminded of that.  It does take some mental discipline.
  3. Setting expectations.  We’re not new to this August thang.  So, when you say year after year to your job, your church, your friends, your facebook feed “August Hard.  We can’t do August.  No, it’s August.”…well, people eventually get it, and stop asking you to do things in August.  My daily log in my BuJo has way less items on it, and that’s essential because I can’t do anything, it’s August…but it’s kind of nice to have a few less plates going in general.
  4. First Day of School Joy.  I’ve heard other families talk about their kids (and even sometimes the parents, which I do not understand, but whatever) mourning the end of summer.  Resisting the new school year.  Whining about getting up in the morning.  Not my family!  We all eagerly see the day count get shorter and shorter, and on that First Day of School, there is so much rejoicing in our house.  That much joy has to be a good thing.

This August is additionally hard as it’s our first in Trumplandia.  The internal stress from the home combined with the external stress of poking the bear of North Korea/nuclear war and Nazi’s marching about in Virginia  (good Lord, who’dve ever thought I’d type that sentence in freaking 2017…?) is at times simply too much.  But we do have these small silver linings as well.

Baby Advice – what I wish I could tell new parents

Baby Advice – what I wish I could tell new parents

Right, so, first thing’s first – I hate getting unsolicited parenting advice.  I hated it before we knew that Isaac was special, and I hate it even more now that the unsolicited advice is rarely helpful to our situation.  “Have you tried ABA?  I read an article that autistic kids do really well with ABA.” <sigh>  “Yes, oddly enough, I am in the know of the most common and documented autism therapy.  Thanks, though.”

Thus, I cringe when I hear myself *give* unsolicited parenting advice.  As it’s happening, my inner voice goes, “No.  NO!  What are you doing, crazy lady?  They hate this!  You hate this!  Stop stop stop!”

It’s rare.  I’ve gotten pretty good at biting my tongue.

But when a new baby comes on the scene, and especially when that new baby is part of my tribe (new nephew, good friend’s new kiddo, etc) – all this advice comes bubbling up and I hold it in.  My new nephew Charlie made his debut last week, and I have so. many. thoughts.

Then I realized – I have a blog!  I can type all my thoughts!  And it’s not giving unsolictied advice, because I’m just sharing my thoughts to the world!

If any new parents (hi Aidan!) happen to read this…well, so be it.  I’m not saying any of this is super helpful or whatever.  It’s just my list.

<drumroll please>

  1. You can’t make a baby sleep.  You can set up behaviors, rituals, and environments that are conducive to sleep…but none of those things guarantee sleep.  Babies do what they gotta do.  Roll with it.
  2. You can be 100% confident that they will either figure out sleeping through the night eventually, or that they will not sleep but will not bother you so you can sleep.  It will happen, someday.  You can set up behaviors, rituals, and environments that are conducive to that day coming, but you cannot make it happen.
  3. Nurse on demand.  It’s what your body and the baby’s body wants.  Be lazy, do what’s easy, nurse on demand.  I am the most scheduled person alive, and I nursed on demand because trying to make a baby shift to my schedule was horrible.
  4. Get life insurance ASAP.  Once anything is wrong with your kid – from autism to pre-existing health stuff – that insurance gets more expensive and harder to get.  Get it as soon after birth as possible – it’ll be super cheap and they have good options now that you can cash out at age 18 and use for college costs.
  5. Baths are important…but not, like, super-important.  If your kid looks dirty or smells, then bath them.  If they don’t, then don’t.  (I mean, babies are pretty gross so you end up bathing daily.  And a bathtime at night is conducive to helping with sleep.  All good reasons…but as kids get older?  If they look and smell clean, let it go.)
  6. You are going to be the primary influence on your kid – on their morals, their outlook on life, on how they view the world.  If someone else in your kid’s life doesn’t exactly match how you roll…it’s okay.  Your kid can still have time with, have a relationship with that person.  You’ve got this.
  7. The parent makes the weather in the house.  How you react to things – to mistakes, to thwarted plans, to rainy days, to running late, to when your kid messes up, or throws up all over you…how you react sets the tone for the whole day, the whole house, your baby’s whole world.  Breathe first.  Take care.  You make the weather.
  8. It is more important to be a good observer of your baby than to know all the facts and “should’s” and details of child development.  Speaking as someone who parented a baby who matched up with *none* of the milestones or sensory reactions of a typical baby…my knowing him, watching him, grokking him was so much more important than my knowing the “right” thing.  If something goes wrong – physical health, developmental delays – you knowing your baby will help the experts SO MUCH.  Watch.  Learn.  Be with them.  Be the expert in your kid.
  9. Ask for help, early and often.  Call the on-call nurse.  Rally your family and friends when you need them.  Related to 10.
  10. Have a village.  You cannot do this alone.  Even if you can for a short time with everything going fine, there will be a time when you cannot.  Deliberately build a village of people you know and trust who also know and love your baby.  Even if you don’t need a sitter right then, have one and be building that relationship for when you do – even if all you do is go out for coffee for 40 minutes and come back home.  So worth it to have that village when you need it.  And you will.

 

Okay, take it with a grain of salt – my parenting journey has been very specific to autism and being atypical.  But…this is what I want to share with the new parents I love.